is just one of the campaigns supported by the
http://cleanerindoorair.org/campaigns/ and the following is a quote from the FRIENDSHIP OVER FRAGRANCE website page:
"
Beware of Lingering Fragrances: Here are a few examples of possible complications with severe conditions: 1) Many laundry products can be very difficult or virtually impossible to get out of clothing. They can also stay on the skin until it is showered off with fragrance-free soap or baking soda and water. Therefore, clothing may not be simply rinsed out prior to a visit. As a result, if loved one cannot tolerate a laundry product, this would be something that would have to be replaced. 2) Perfumes and air fresheners can remain in clothing, hair and on skin, so even if a person does not apply a perfume that day, the scent may still linger. 3) Fragrance from some hair products such as shampoos, gels or hair coloring conditioners can stay in the hair even after several washes"
Just what I have been saying to people for years. FRAGRANCE LINGERS....
THIS ENTRY IS SIMPLY SO I CAN CARRY ON. I NEED TO TELL THIS STORY FROM MY POINT OF VIEW. IT DOES NOT CARRY ANY BLAME, IT CARRIES NO FAULT, IT IS SIMPLY AN ACCOUNT OF MY RECOLLECTION OF EVENTS.
WHEN YOU SUFFER FROM AN AFFLICTION THAT NO ONE UNDERSTANDS, YOU ARE ON THE OUTSIDE FIGHTING TO BE INCLUDED. IT IS SO VERY DIFFICULT FOR FAMILY MEMBERS TO GRASP WHAT THE MCS SUFFERER IS GOING THROUGH. IF THE HEALTHCARE SYSTEM OR "JOE PUBLIC" DOESN'T ACKNOWLEDGE IT, HOW CAN YOUR FAMILY?
I left the hospital on September 16th of this year lost and alone. I had gone in with an acute case of colitis AND ileitis, which, from what I am now reading, can be caused by MCS. During my stay, I was sent into an "MCS attack" by one of the techs coming in to take my vitals was loaded with fragrance. Several days later I was sent into a seizure by incompetence (in my eyes), put in ICU for two days and after which, was ignored by nursing staff back in a room for over an hour while I called and called. I came home alone and barely able to function due to the antibiotics and drugs prescribed. My lungs still burned, my head was dizzy, spinning and confused, my stomach didn't think it could hold down anything but soup, which is what I did when I got home... ate liquid. Drank water. Spent a lot of time in bed. I couldn't get rid of the feeling that my life was over. That everything was so changed that it would never be the same. I stopped smiling. You never feel quite so alone as you do when you come home from hospital to an empty house wondering on the residual effects of the incompetence might be.
To top off the imbalance I was feeling over all;
My daughter got married on October 5th, 2013. I don't remember much of anything from that day and she hasn't spoken to me since.
She had spent ten months letting everyone connected to her wedding that it was to be FRAGRANCE FREE. She gave out little samples of unscented body wash, shampoo and lotion at her engagement party and other get togethers she had throughout the year. She made every effort to make it feasible for me to be included in her very special day. Although I asked her several times if I could handle letting her guests and party know about the REASON for the "fragrance free" and how to go about handling it all, she informed me that she was handling it and all would be well.
I went to her engagement party only to be wafted by several ladies wearing perfume, then smiling at me and saying, "Oh, I forgot!", so I sat in a corner, didn't talk much to anyone and my daughter had to go out of her way to come my way...
Her bridal shower was wonderful, fun and every person there had come pretty well unfragranced and had I known them I would have hugged them... until someone opened a kitchen cupboard door and started pouring the almighty scented dish soap into the sink... I had a minor breakdown and sat at the far end of the family room until the rest of the kitchen had cleared out of smell.
I mentioned to her more than several times that perhaps it would be better if I just didn't go to the wedding as there is always someone in a group who just doesn't clue in. She insisted that it would be fine and I was just overreacting.
My daughter suggested that we would just bring our camper down into the city and stay in that for the weekend of the wedding but without a safe place to park it, (not allowed in her yard or driveway because of the in-laws), I wasn't prepared to leave $90,000 worth of truck and camper in the cul-de-sac outside the house they rent. They had already had a burglary.
So, after listening to the silent 'whining' for several weeks coming up to the date, I started calling around for a room to stay for two nights. I had known by calling the Inn where their ceremony was being held at the beginning of the year that the kids had chosen a 'GAME' weekend. In Gainesville, FL, this means that EVERY hotel, motel and Inn DOUBLES its prices on rooms. Talk about gouging... but I finally reached the Budget Inn on SW 13th Street and after a 15 minute conversation with the lady on the phone where I explained IN DETAIL that I required an UNSCENTED, FRAGRANCE FREE and CHEMICAL FREE room because of my illness. She assured me there would be no problem, that they would put us in a room that hadn't been used for a week and she would make certain the room wouldn't be sprayed or strong cleansers used.
The Friday afternoon arrived and I made it down to Gainesville to check in. On the phone with my husband, he mentioned that I probably couldn't stay in the room, that it was pretty strong. I said, OK, should just not stay there and he didn't say anything, so I suggested I just get there and see.
Mistake
BIG MISTAKE
I barely poked my head in and was hit full in the face with so many chemicals and fragrances that it nearly knocked me backward. My husband then said, he had spoken to the girls mother who told him, she had forgotten and SPRAYED THE ROOM that morning.... I started to shake. When I walked into the office, the young lady was apologetic but informed me that whether or not I took the room, I would pay for a night. I said, "you promised me a FRAGRANCE FREE room!"...
Too bad, so I put out for a night, left COUGHING, HEADACHE, EYES STINGING (hospital stay all over again) and by the time I got into the car and back on SW 13th Street the ANXIETY attack started. I called my daughter to find out if it was OK to go to their place. Of course, she was getting ready for the rehearsal, we ended up short with each other and I drove up to their place to drop off treats I had made and perhaps get the chance to settle down a bit.
As I backed into their empty driveway, my husband walked up and told me, "no parking in the driveway." Someone else had that privilege, I guess. I burst into tears. Actually couldn't control them. I tried to explain to my husband, standing by the car not knowing WHAT to say or do, that it was an anxiety attack. It didn't make him understand any better.
I drove my car back out and parked in the street, wiped my eyes as best I could after yet another crying fit and loaded up with things. When I walked into the house, fragrances hit me full in the face. There were people there. No one introduced me. I walked in, just about gasping for air, handed my daughters' fiancée the cookies I had made for him, dropped the rest wherever I could and got back out of the house as fast as I could. At the car, I cried again... couldn't stop shaking. Now I had to go to the rehearsal and dinner.
By the time we got to the Inn, I was shaking, nervous and in a full fledged anxiety attack. I got out of my husband's truck and there were the in laws. I couldn't say anything by this time. I was angry with them, over and above everything else wafting through and over me. My husband walked me across the road and we had to find a seat. Smells everywhere... so I found a lovely seat over looking where the rehearsal was to be outside. The only problem with that was the fact that, here come the in laws walking down the path. So I moved to the seat even further away. Tucked behind some bushes.
My husband and son sat and talked with me. By this time, the anxiety attack was in full swing and I could barely contain the tears. Last straw was the planner calling everyone over to let them know what to do, where to sit and just being a good organizer. I barely contained the tears. I know I didn't look happy. I wasn't happy. I was actually very, very angry at the motel and the in laws, who had been told and told and told that it was to be FRAGRANCE FREE.
Everyone avoided me like the plague. At the end of the rehearsal, the planner was telling everyone how to exit. My husband walked out alone. I was forty feet away, wondering why I even existed anymore. I was standing alone, walking alone and fighting the urge to run away.
A young lady came up to me afterwards, all smiles. I had no idea who she was, but she suggested I was the mother of the bride... I told her to stay away because she was wearing fragrance. Then I said to her, "If I can't be involved in the rehearsal or the dinner, how am I going to attend the wedding?" Then I had to walk away from her.
I decided that it would be disasterous for me to attend the rehearsal dinner. My husband insisted I go, but I just couldn't and told him to take me back to my car and he would go on with the evening. Before I left, someone gave me a couple of anxiety pills. My husband tucked them into a paper and put them away. Then he drove me back to my car. I got the pills from him thinking, 'I'll need these.' I cried all the way home. In fact, I can barely remember driving home, but was certainly glad to get there.
The next morning, wedding day, I woke in trepidation. I was still gasping from the day before. My lungs were on fire. My throat hurt. The headache would have knocked over a horse. I told my husband that I didn't think it would be wise if I went to the wedding. You can imagine his reaction to THAT. He wasn't happy. I don't know what he was thinking, because he doesn't share much, but he certainly didn't look happy. The anxiety wouldn't go away, so I took one of the pills. It didn't seem to help much. It was an evening wedding in a lovely surrounding. It was a perfect day as Mother Nature hands them out and I was about to ruin my daughters' wedding. I REALLY didn't want to go.
It had nothing to do with the wedding, it had everything to do with FEAR.
It was insisted I go. The anxiety was overwhelming. By the time we got there I wanted to literally, die. When my daughter came over to me, she didn't seem very happy with me either, but there was no explaining the situation or what my body and especially my brain, was putting me through. I sat on the same tucked away bench I had the day before and shook. I started drinking scotch, mostly because I thought it might help. It didn't.
I had to wear an N100 respirator mask for the wedding. It is uncomfortable and ugly and felt both. It was a beautiful wedding from what I could see through the tears.
I don't remember a lot of the night. I remember shaking so badly that I spilled a drink (on myself, of course). I remember being handed a dinner of a dried out chunk of chicken, green beans that weren't cooked and a half cooked baked potato. After just having been in the hospital with acute colitis, then being put through an MCS attack & seizure while there, this was the last straw. I wanted to disappear. That was actually the last thing I remember.
In my misery, I mixed pills with alcohol. Panic attacks, especially when they roll over you one after another, make a person do really stupid things.
I died that day.
The next morning, dragging myself out of bed in more distress than I can ever remember having, I asked my husband over and over and over, "what did I do last night?" He turned his back and drove away. He lives through the week in the city for work.
I didn't hear from him for more than a day. It wasn't even hearing from him.. no conversation. He still wouldn't tell me what I had done that was so horrible.
During the three or four days after the wedding day, I crumbled. It was like coming home from the hospital all over again. I literally melted down. I thought of suicide, wanted to die. I even made arrangements for the animals in my life. I wanted them to be safe and loved when I was gone. I don't know how I made it through that week. I really don't. I have now had the opportunity in my life to plan my own death. It is very frightening to me sitting here now 'penning' this blog, I have no idea how I have made it past those thoughts this last month or more, they were so completely and absolutely overwhelming.
It was more than a week, with a weekend of silence in between, that my husband finally emailed me and told me how 'humiliated and disgusted' he had been. It still took me another half a day to find out that I had been "comatose" during the reception. So, what was so humiliating and disgusting if someone is just sitting there, comatose? At least I didn't dance naked on the tabletop, right?!
He informed me through an email, "That you didn't have to be. That you were certain that the whole thing was all about you, and your sickness. When it should have been only about (my daughter's) great night..... I have since realized that you were trapped with no options..."
His realization hit AFTER I found and posted websites relating to MCS and how people described how it affected them on this blog. As I have stated in previous entries... it isn't until someone else, the EXPERTS, the INTELECTUALS, the DOCTORS... anyone EXCEPT YOU states the facts.
Why do family members, no matter how they come across, no matter what they say, NOT believe an MCS sufferer? What makes them think that we are exaggerating everything we do and say. I certainly don't think that MCS is a way to get attention. How could someone who is your FAMILY, someone who loves you possibly even think something like that?
That was two weeks ago. My chest is still tight. My throat is sore. My ears ache. I am forgetting the most simple things, tasks. I haven't smiled once. It has been a horrendous several weeks. The one good thing I have done is started this blog and found several excellent websites, and now you all know WHY.
Multiple Chemical Sensitivity has got to be recognized on a much deeper basis than it currently is. This is a DISEASE.
A DEBILITATING DISEASE that kills us slowly
while the people around us, who are supposed to watch over us, just watch or
walk away.
My life as ended as I used to know it. It is gone and I am sad.
My daughter still hasn't said a word to me. Perhaps that is something that will come to understanding one day. Perhaps not.
After finding the
www.InvisibleDisabilities.org website and the posters [Choose Friendship Over Fragrances, ARE YOU MISSING A LOVED ONE FROM YOUR LIFE?], campaigns and information they have as well as the MCS Referral and Resource website at
www.mcsrr.org where I actually spoke with Albert Donnay, MHS and started to feel that there actually ARE people out there that are working toward trying to get the information out to the public.
I am missing from my family's life. Do you think they will ever care to find me? Really?
